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Very interesting article about the survival gap between US and Canadian CF patients. http://www.cnn.com/2017/03/13/health/cystic-fibrosis-canada-vs-us-survival-study/

I'm sure many have seen this already. But for those who didn't, meet Sammy, an adorable 2 year old with CF, who is helping to raise awareness for CF with her bottle flipping skills. :) Thank you to the Ellen Show for creating a platform to raise awareness of CF and for the $10,000 donation to...

From CFRI website: "Our next online Mindfulness Based Stress Reduction (MBSR) course starts on Thursday, February 2 at 6pm PST. Class size is limited to 25 people, so sign up early! Free to those with CF; $50 for family members and caregivers. Led by Julie Desch, MD. MBSR combines body...

Watched NBC nightly news tonight and there was a segment on the importance of an online community for cancer patients. Different diagnosis but same message: A forum like cysticfibrosis.com not only provides emotional support but also empowers patients by sharing knowledge that allows them to...

ENROLLING | RESTORE CFTR FUNCTION Phase 2 study of VX-440 combination drug in people with cystic fibrosis › DESCRIPTION: This study is taking place at multiple care centers across the U.S. It will look at the safety and effectiveness of the drug VX-440 in combination with ivacaftor and/or...

Great summary of first plenary at NACFC today: https://www.cff.org/CF-Community-Blog/Posts/2016/On-the-Road-to-a-Cure-Pushing-for-Treatments-for-Everyone-With-CF/

Excellent video that was live streamed today from NACFC. Was recorded and can be viewed anytime at: https://www.facebook.com/cysticfibrosisfoundation Lots of great information.

Please let us know if you don't see a post that you wrote. For some reason, some posts aren't showing up unless you are logged in. As a moderator, I just activated at least 4 posts over the last week that weren't showing. For moderators- log in every once and awhile and compare "What's New"...

Useful information for those applying for disability: New Social Security rules for Cystic Fibrosis take effect October 7th, 2016. Here's a CF Roundtable blog post by Beth Sufian,Esq. that reviews the changes: http://www.cfroundtable.com/category/cf-and-disability/

I’m on the great strides advisory committee for my local CFF chapter. I have a meeting tonight and am looking for ideas to pass along. It’s been noted that most of great strides participants are families that have children with CF. There’re a lot of activities at the walk that are focused on...

https://tools.cff.org/Display/dsp_ClinicalResearchHTML.cfm?id=406&IDH=9176856&State=&advancedSearchOn=true&ageshow=&status=&FEV1=&PSEUDOMONAS=&BCepacia=&PLT=0&Therapy=&Char=&Keyword=661 See link clinicaltrial.gov site for all participating sites...

On CFF website. Study not enrolling yet, no participating sites listed yet. See below for list of mutations that are eligible. Study Name: Vertex 661 and ivacaftor (Vx-661-107) in people with cystic fibrosis ages 12 and older with one copy of the F508del-CFTR mutation Study Type...

PROSPECT study Just received an e-mail from CFF notifying me of the following study: PROSPECT This trial aims to identify biomarkers that show CFTR function and disease progression. It will also look at the effect of ivacaftor/lumicaftor on those who may be prescribed treatment. It is for...

I was wondering if anyone could recommend a counselor in the Phila./South Jersey area? I've been to a couple of therapists and am having a hard time finding someone that is a good fit. I would prefer someone that specializes in treating those with chronic illness. You can respond through this...

My glucose tolerance test came back slightly abnormal. My fasting was normal at 78, 1 hour post was 211, 2 hour post 164. My HbA1C is 5.7. These are in the "pre-diabetic" range. I will be going to an endocrinologist who has experience treating CFRD as soon as I can get an appointment. In the...